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Advocacy smorgasbord-Advocate 4 breast cancer, healthcare causes

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  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
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  • Lumpie
    Lumpie Member Posts: 1,553
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    Karenfizedbo15: Seems like sometimes they get in a hurry to put out fires (which often do need to be put out) and don't think much about equitable balance. Hope things work out for everyone!

  • Lumpie
    Lumpie Member Posts: 1,553
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    Lymphedema Treatment Act advocacy

    For those who did not see it, lymphedematreatmentact.org put out an announcement today. Here are a couple of highlights:

    Another, much larger emergency response package in addition to the one currently awaiting passage in the Senate is expected in the coming weeks. We ask that you stand ready to act quickly if we issue an urgent call to action to contact your own members of Congress, or those from select Congressional Committees. We may have a very small window of opportunity to persuade lawmakers to include the LTA.

    We also encourage you to join your state's advocacy team if you have not already done so. Team members receive additional resources for contacting Congressional staff, and also have direct access to members of our Advocacy Training Committee. And, you can increase your impact while doing everything from home via phone and email.

    The link above will allow you to sign up for your state's advocacy group if you are so inclined.

  • Lumpie
    Lumpie Member Posts: 1,553
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    3/16/2020: A National Breast Cancer Coalition communication says: Thank your (U.S.) Representatives and Senators for Supporting the DOD BCRP

    Thanks to your advocacy efforts 199 Representatives signed the letter to the House Defense Appropriations Subcommittee and 24 Senators signed the letter to the Senate Appropriations Committee calling for $150 million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2021.

    Please contact the Representatives and Senators in your state who signed the letters and thank them for supporting the DOD BCRP.

    Thank you for all your hard work! We could not have done this without you.

    {These appropriations comprise a significant amount of funding for breast cancer research. I also took the opportunity to ask my representative to co-sponsor the Metastatic Breast Cancer Access to Care Act (HR 2178/S 1374).}

  • Lumpie
    Lumpie Member Posts: 1,553
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    One minute advocate:

    19th March 2020

    This from the American Cancer Society Cancer Action Network:

    Right now – literally – the U.S. Senate is discussing the next coronavirus relief package. We need to make sure your senators know that community-based charitable organizations should be part of that package.

    Please send a message to your U.S. Senators asking them to provide support for the organizations whose mission is to serve the people in their community. It takes less than a minute using our easy action form.

    https://secure.fightcancer.org/site/Advocacy?pagen...


  • Lumpie
    Lumpie Member Posts: 1,553
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    Over 100 Lawmakers Call on Administration to Open Special Enrollment Period Now to Combat COVID-19

    https://doggett.house.gov/media-center/press-relea...

    This link goes to a Congressional Representative's website. It outlines his position in favor of a special enrollment period. The text of a letter to The Secretary of HHS, which oversees the federal marketplace, is on the page. If you wish to advocate for a special enrollment period, you could use this language as a template/model to petition Secretary Azar and to ask your own congressional representatives to encourage the Secretary to open a special enrollment period.

  • Lumpie
    Lumpie Member Posts: 1,553
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    H.R. 6201, FAMILIES FIRST CORONAVIRUS RESPONSE ACT Emergency Paid Sick Leave.

    This memo outlines the provisions of the House version of Emergency Sick Leave legislation. The bill has passed the House but has not yet passed the Senate. Some of you may be interested in reviewing the substance of the proposed legislation. Others may wish to reach out to Senators to advocate for or against certain provisions.

    https://appropriations.house.gov/sites/democrats.a...


  • Lumpie
    Lumpie Member Posts: 1,553
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    The 2020 (U.S.) Census is now live! And it has never been easier to respond on your own, whether online, over the phone or by mail—all without having to meet a census taker. Go to 2020Census.gov right now to fill out your census.

    The census affects funding for all sorts of services, including health related services.

  • Lumpie
    Lumpie Member Posts: 1,553
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    One minute advocate:

    See if your (U.S.) representative or senators have co-sponsored the Lymphedema Treatment Act and, if so, Tweet them a thank you:

    Tweet a "Thank You" to our cosponsors! http://www.votervoice.net/Shares/B0XeOAp4AC9tRAgJB...

    Share this campaign on your personal website:

    http://www.votervoice.net/Shares/B0XeOAp4AC9tRAgJB...


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    My representatives have not signed on to the Lymphedema bill of rights, and replies to my letter were pathetic. As my lymphedema sleeve/glove wear out, I am tempted to send them to one of them in particular. Fortunately I do have good private, and am trying to find out if it is true, that if Medicare does not cover, neither will my private. Then why keep the private I ask. Landscape keeps changing, and will no doubt change again when I have to make that decision in 2 1/2 years. CV-19 pandemic will raise Health Care to a new level.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
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    Just to say I had a 50min phone conversation with the clinical policy adviser to the UK dept of work and pensions (DWP) specifically around our our experiences dealing with their systems and processes ( the actual meeting was cancelled, clearly, but Marie Curie arranged for 9 of us across the UK to talk 1on 1 with DWP delegates).

    I genuinely think she was shocked at just how inefficient and stressful the system is when you are on the receiving end. As a doctor with a background in palliative care she should be on our side. As I am still waiting on a decision as to whether I need to attend a ‘ fit for work’ interview - really? I have a very good job which I just can’t manage any more with MBC - she did ask if she could contact me back to see if the system actually made me go through with that. We’ll see....

  • Lumpie
    Lumpie Member Posts: 1,553
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    Karenfizedbo15:

    So impressed that you got to speak with the clinical policy adviser @ DWP! Sounds like she showed appropriate concern. Even if things don't change right away, I find with the government here that making change can be like dislodging a boulder: You have to overcome a lot of inertia, but with persistence (and a few squeaky wheels), you can often get things moving. Good luck!

  • Lumpie
    Lumpie Member Posts: 1,553
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    Update:

    Thank you to all those who participated in our recent survey, What is the Impact of COVID-19 on Lymphedema Patients?

    The responses made it clear that the impact this crisis is having on patients' ability to manage their lymphedema is only beginning to be felt.
    • Many patients are already seeing a worsening of their condition due loss of access to therapy, while others noted that their swelling has worsened even without a change to their care, and they attributed that to stress.
    • Due to loss of income, many said they have no idea when they will be able replace their compression garments, since their insurance does not cover them.
    • Many are concerned an inability to manage their lymphedema effectively will lead to an infection or other complication requiring medical intervention, and in the process of seeking care their risk of contracting COVID-19 will be increased.
    • Those who've experienced infections in the past and and required IV antibiotics are afraid if this happens now hospitals will not have space available to treat them.
    In summary, the feedback we received confirmed our assertion that it's more important than ever to pass the Lymphedema Treatment Act!

    Over the years, we have collected nearly 700 patient stories from across the nation, and they have been very valuable in helping lawmakers understand the need for the LTA. Now, we invite you to submit an update to your story (or share it for the first time), so that we can be sure to have the most current and compelling information to persuade your members of Congress to get the LTA signed into law. The form includes suggestions for the most important new information to include. Click HERE to begin.
    https://lymphedematreatmentact.org/
  • Lumpie
    Lumpie Member Posts: 1,553
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    NCCS Hosts First-Ever Virtual Cancer Policy Roundtable

    Last week, NCCS hosted its spring Cancer Policy Roundtable event, which convened patient advocates, providers, health care experts, and government agencies to discuss pressing issues in cancer care policy. NCCS has been hosting roundtables for 20 years, but given the public health crisis we are currently facing, this was the first virtual roundtable event. We are proud to say that it was a success, with over 200 attendees who heard from eleven dynamic experts in cancer care. You can view the sessions, handouts, and background materials here.

    Additionally, NCCS will release a summary of the event soon. Also, check out this excellent article that features our roundtable keynote speaker, Dr. Otis Brawley.
  • 2019whatayear
    2019whatayear Member Posts: 468
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    Lumpie thanks to your thread I have joined my state's group for the Lymphedema Treatment Act. :-) I hope I am able to push for this much needed bill to pass!


  • Lumpie
    Lumpie Member Posts: 1,553
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    One minute advocate

    If you want to tell Congress more PPE is needed immediately, here is a quick and easy way.

    American Nurses Association sponsored template email to members of Congress asking them to support the Medical Supply Chain Emergency Act (S.3568/H.R. 6390) and prioritize health care personnel. We need our healthcare providers to be safe and keep us healthy! Review this opportunity here:

    https://p2a.co/aniIqgT

    (If you are not a nurse, that is ok. Just remove the reference int he first line of the template letter and you should be good to go. Thanks for supporting care providers.)

  • 2019whatayear
    2019whatayear Member Posts: 468
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    Check done, thanks for the post !

  • Lumpie
    Lumpie Member Posts: 1,553
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    NBCC Virtual Lobby Day

    NBCC's lobby day is going virtual. Lobby day will take place at the conclusion of the virtual Advocate Leadership Summit. We are targeting the third week of June and will notify you as that date firms up. If you or someone you know would like to register for lobby day free of charge, please register here.

  • Lumpie
    Lumpie Member Posts: 1,553
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    One Minute Advocate

    Please send a message to your lawmakers now asking them to support people impacted by cancer by including the below provisions in the next coronavirus relief package. It takes less than a minute using our easy action form.

    We need your members of Congress to support the inclusion of these provisions:

    • An opportunity for cancer patients, survivors and others who have lost their job or need health insurance to have a special opportunity to enroll in an Affordable Care Act health insurance plan. Without this, they may not have access to affordable health care during this critical time.
    • Make it more affordable for cancer patients to take their cancer medication at home in a pill form rather than require them to go to a health facility for an infusion if their doctor approves the change.
    • Ensure lower-income cancer patients and survivors who can't afford private health insurance are able to enroll in their state's Medicaid program and that it's funded to meet the rising demand for care and treatment caused by this pandemic.
    These are extraordinary times. And the struggle for cancer patients to maintain their lifesaving treatment has never been greater.


    This action is sponsored by American Cancer Society Cancer Action Network

    https://secure.fightcancer.org/site/Advocacy?cmd=d...


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
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    Good work Lumpie... sadly I can’t input here as all US based, but hope others will!

  • Lumpie
    Lumpie Member Posts: 1,553
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    The Lymphedema Treatment Act NGO is still collecting new/updated stories for sharing with members of Congress. The story submission form includes suggestions for the most important current information to include.

    https://docs.google.com/forms/d/e/1FAIpQLSfEeBx4Fu...
  • Lumpie
    Lumpie Member Posts: 1,553
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    The National Coalition for Cancer Survivorship legislative alert below, outlines how to take action and how to reach out to your Members of Congress to ask them to act now:

    Legislative Alert: Tell Congress to Expand Paid Leave for People With Chronic Heath Conditions

    NCCS is here to help. Use the links below to call or email your Members of Congress, or contact Lindsay Houff and we are happy to help you. Sample script for calling or emailing your legislators:

    Subject: Expand Paid Leave for People with Chronic Conditions During COVID-19

    Dear [Legislator title, name],

    We appreciate the expansion of emergency use of the Family and Medical Leave Act that was recently passed by Congress. I am writing to ask that it include cancer survivors, who may require time away from work due to the risk COVID-19 poses to their health or health of a loved one. Right now, cancer survivors are not included in individuals who are eligible for FMLA paid leave.

    Because of their history of cancer and cancer treatment, cancer survivors may have weakened immune systems which can then lead to a reduced ability to fight off infections. Cancer survivors may be at higher risk of health complications from COVID-19, and may experience more serious COVID-19 infection if they acquire it.

    As a constituent, I urge you to expand eligibility for the paid family and medical leave program to protect Americans who are most vulnerable to the COVID-19 pandemic.

    Thank you for your consideration.

    Sincerely,
    [Your Name and Address]
  • Lumpie
    Lumpie Member Posts: 1,553
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    One Minute Activist

    If you'd like to Tell Congress to Pass Paid Sick Days & Paid Leave for All Workers, Time's Up has a templated opportunity at your disposal:

    COVID-19 poses a threat to the health and safety of millions of workers. Congress took a first step by passing the Families First Coronavirus Response Act. But carve-outs in the law have left millions of workers without paid sick days and paid family and medical leave when they need it most. {That includes times when they have cancer!}

    That's unacceptable. Every worker deserves access to paid sick days and paid family and medical leave — no matter who they work for.

    Send a message to your senators and representative and urge them to pass paid sick days and paid family and medical leave for all workers, and make it permanent.

    https://times.upnow.us/3djVZ4g


  • Lumpie
    Lumpie Member Posts: 1,553
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    One Minute Advocate

    An estimated 279,100 women and men in the United States will be diagnosed with breast cancer and 42,690 will die from the disease in 2020 alone. On behalf of these Americans, we are asking Congress to prioritize:

    • Implementation of Chemotherapy Parity
    • Access to Clinical Trials for Life-Threatening Conditions
    • Opening Healthcare.gov Enrollment
    • Addressing Surprise Medical Billing
    • Expanding Paid Leave

    Help us ensure critical protections for cancer patients are included in the next COVID-19 relief package by taking action now!

    sponsored by Komen

  • Lumpie
    Lumpie Member Posts: 1,553
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    One Minute Advocate

    Congress is beginning to work on the next COVID-19 response package, and it is expected to have a broader focus than previous coronavirus-related legislation.

    Please contact your members of Congress and
    ask them to include the Lymphedema Treatment Act!

    Lymphedema patients need compression to stay healthy, and under current circumstances preventative care must be an even higher priority! More than 10 years of data has overwhelmingly demonstrated that through the use of medical compression lymphedema patients see a greater than 40% reduction in doctor and therapy visits, and a greater than 50% reduction in hospitalizations.*

    Use our new Email and Twitter Action Alerts to send a message to your members of Congress simply by filling in your name and contact information. Pre-written templates are provided. If you are not on Twitter yet you can sign up here.

    Send an Email to Your Members of Congress

    Send a Tweet to Your Members of Congress

    Thank you for your advocacy!

    Heather Ferguson
    Founder & Executive Director
    Lymphedema Advocacy Group
    Visit our Website

    * Cost-Savings Attributable to the Use of Compression Garments
  • Lumpie
    Lumpie Member Posts: 1,553
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    Why Advocacy?

    By Abigail Johnston · for AdvancedBreastCaner.net December 10, 2019

    All kinds of advocacy are effective. I think there are as many brands or kinds of advocacy as there are people. I think it is easy to think that you have to do advocacy in one way, the way other people are doing it. I think that everyone has unique gifts that can't be compared without anyone else's gifts. I think that we need everyone's help if we are going to be effective – the job is too big for just a few people.

    My why is huge, a monumental task. What is your why?

    As Beth Caldwell said, on her blog, and which we reiterated in the readings of the play, IV: "We must and we will save our own lives".

    Read more here:

    https://advancedbreastcancer.net/living/why-metast...


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
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    Well said Lumpie

  • Lumpie
    Lumpie Member Posts: 1,553
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    {For those in the U.S....} The House is expected to return this week to vote on the next legislative package - please contact your Representative again about including the Lymphedema Treatment Act (LTA)!

    Calling is the most effective and all information is below.

    You can also use our new Email and Twitter Action Alerts. Simply fill in your
    name and contact information.

    Constituent contact is vital! (At least 5 contacts from constituents makes a difference!)

    CALL SCRIPT:
    Customize the (parentheses) text for each office and your personal situation.
    If your call goes to voicemail leave a message, it will be collected.

    "Thank you for (Representative's name) efforts to protect the public health during this crisis (and for his/her cosponsorship of the Lymphedema Treatment Act).

    I'm calling to ask that the Lymphedema Treatment Act, bill number H.R.1948, be included in the next appropriate coronavirus response package.

    (One sentence stating your relationship to lymphedema.)

    (If you or the patient(s) you are speaking about have experienced increased difficulty managing your/their lymphedema due to the coronavirus explain very briefly here.)

    This bill will help lymphedema patients remain healthy and avoid unnecessary hospitalizations and other complications at a time when reducing the burden on our health care system is the highest priority. Preventative care is more important than ever.

    Will you please pass on this message to your health staff?"

    * If you are unsure who your Representative is click here and enter your zip code.*

    {Representatives rarely act unless they hear from constituents. They represent you. Let them know what is important! Thank you.}

  • Lumpie
    Lumpie Member Posts: 1,553
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    Register for the First-Ever Virtual CPAT Symposium

    June 15-16 & 22-23, 2020
    (Including Virtual Hill Week June 22-26)

    What you have experienced, endured, and learned matters to not just you, but to everyone who has and will be touched by cancer. Your story, and how you tell it, can shape how decision makers provide quality cancer care to millions of cancer survivors.

    That is why NCCS invites you to the annual Cancer Policy and Advocacy Team Symposium virtually, on June 15-16 and June 22-23 from noon to 3 p.m. ET each day, including a virtual Hill Week June 22-26. Advocates from around the country will connect to listen and understand your journey.

    There will be three different tracks so you can choose your own Symposium experience, whether you're new to advocacy or a seasoned Symposium attendee. You'll also:

    • Hear from health care and policy experts about the future of cancer care, managing stress and anxiety, how to "return" to work, and more;
    • Participate in a roundtable on what survivorship means for people with metastatic cancer and help shape the conversation around metastatic survivorship;
    • Hear from Washington insiders about health policy during the COVID-19 pandemic; and
    • Prepare for and attend meetings with Congressional staff through the virtual Hill Week June 22-26.
    We encourage you to invite others to register. The Symposium is exclusive to CPAT members, which is free and easy to join! Join here.

  • Lumpie
    Lumpie Member Posts: 1,553
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    ANNUAL ADVOCATE LEADERSHIP SUMMIT & LOBBY DAY

    Live Webcasts, May 19-June 16, 2020

    {There is a $350 registration fee for this summit, but I hear great things about it.}

    There is nothing else like an NBCC Summit, and this year will continue the amazing tradition of science, policy and networking. Join us at the NBCC Advocate Leadership Summit designed for dedicated advocates who are looking to enhance their knowledge about breast cancer and hone their advocacy skills. You'll learn more about the science of breast cancer and the newest advances and explore the complicated political climate in which we advocate for policy change. The Summit offers many opportunities to interact with other advocates, researchers, and NBCC staff, including a virtual party where we will celebrate with our newest advocates and our long-standing supporters.

    In a series of live webcasts hosted over four weeks, you will participate in dynamic, interactive sessions with world-experts in breast cancer research, advocacy and policy where you'll have the opportunity to ask questions. Don't worry if you can't attend every live session; the videos will be archived for all registrants to view later On Demand.

    The program culminates on June 16th, when participants put their new skills and knowledge to use during NBCC's Virtual Lobby Day. There will also be a virtual advocate reception…stay tuned for details.

    http://act.stopbreastcancer.org/site/PageServer?pagename=About_The_Summit